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After reading the definition of LTS posts and rereading my original post, requesting this forum, I find myself torn between the concept of the forum, as opposed to the reality today. Since the forum already exists, I respectfully submit a concept for a new welcoming thread. I believe that we need to limit the members who can post in this forum and I do not see, why we cannot request, just like the women's forum, that certain members do not post in this forum.

It has been two years since this forum began and nobody is suggesting that it has been anything less, that a huge success. When this forum was created, it was meant to provide a seperate forum, for LTS members only, where we could discuss needs that are unique to our segment of the HIV community. However, this site continues to grow and there are too many times when newer members, post comments here, that are hurtful and disrespectful to all LTS members.

I also reject the notion, of having to report every offensive post to the moderators, when we can alter the participating members, by clearing defining a LTS member and asking others to kindly refrain from posting. We have seperate forums for a reason and this one did fine, but now the needs have changed. I would submit that we alter the welcome message and with that in mind, I offer the following.

Welcome to the LTS Forum

This LTS forum, is a safe place for Long Term Survivors (LTS), including Long Term Non Progressors (LTNP), who are those who tested positive, before the advent of HAART and have lived with HIV since 1980s and into the early 1990's This forum is a result of LTS members, asking for a place to discuss issues, that are unique to those who lived thought the initial decades of HIV. The forum is meant as a place, where LTS can discuss issues, unique to them, including decades of surviving with HIV, decades of antiviral drug use, long term effects of those drugs, increasing deteriorating body and mental functions, post traumatic stress at having lost hundreds of loved ones and guilt for having survived, when so many others did not. Many of these issues, are not the same as those faced by the newly infected members and this forum is a place for all LTS members, to discuss those issues that are unique to this segment of the HIV community.

We imagine that the information contained in this forum, will be very informative and all members are encouraged to read the forums. However, given the special needs of this forum, as a unique place for LTS members, we ask that only LTS members post in this forum. If you find a topic of interest, please consider creating a new post, in another forum, inviting LTS members to comment.

Thank you for your cooperation.

Based on a members suggestion, edited to use actual year dates, rather than 15 years, to define a LTS.

Since I've always believed that the people infected at the start of this epidemic are having a different life dealing with this disease and the treatments than the people that were infected literally decades later, and those are two radically different groups of people with different treatment/therapy regimens, I like the new proposal.

Being diagnosed with AIDS when it was an almost inevitably fatal disease is very different than the being diagnosed with HIV today. Further, many of us with nadir CD4 count well under 200 never really recovered our immune function or our health.

This LTS forum, is a safe place for Long Term Survivors (LTS), who are those who tested positive, before the advent of HAART and have lived with HIV since 1980s and into the early 1990's This forum is a result of LTS members, asking for a place to discuss issues, that are unique to those who lived thought the initial decades of HIV. The forum is meant as a place, where LTS can discuss issues, unique to them, involving decades of antiviral drug use, long term effects of those drugs, increasing deteriorating body and mental functions, post traumatic stress at having lost hundreds of loved ones and guilt for having survived, when so many others did not. Many of these issues, are not the same as those faced by the newly infected members and this forum is a place for all LTS members, to discuss those issues that are unique to this segment of the HIV community.

I’m afraid I see elements of this proposed revision as divisive even amongst LTS. I read it and it made me feel like I wouldn’t be welcome here now despite having been diagnosed in 1991. The reasons I felt that:

‘decades of antiviral drug use’ – well despite my diagnosis 18 years ago I have only spent a total of 4 years on treatment (and that was spread only over the last decade).

‘long term effects of those drugs’ – again as I chose not to take the early regimes offered to me I am not experiencing any long-term effects.

‘having lost hundreds of loved ones’ – I lost 3 significant people from AIDS related illnesses – my former partner Ian, my flatmate Pros and my first boss, Nick, all within a 15 month period and several friends from my early support group but hundreds, no – and so I cannot relate to that scale of loss.

However I still have lived through 18 years of knowing that I was infected and wondering if and when my health would fail; I lived through and still live with the rejection from my mother after she found out I was positive; I lived through making the decision to terminate a pregnancy a year into my diagnosis after being strongly encouraged by doctors who told me I was unlikely to live to see the child grow up; I lived through the times when t-cell counts were the only available blood test to base decisions on and less than 200 was the time to start treatment, unlike the 350 or 500 of today; I could go on…

But despite my experiences I still feel like an outsider amongst some of the LTSs who post here, hence my infrequent contributions now. If the proposed changes are adopted, just like in the real world of HIV support I will feel marginalized and excluded.

I’m afraid I see elements of this proposed revision as divisive even amongst LTS. I read it and it made me feel like I wouldn’t be welcome here now despite having been diagnosed in 1991. The reasons I felt that:

‘decades of antiviral drug use’ – well despite my diagnosis 18 years ago I have only spent a total of 4 years on treatment (and that was spread only over the last decade).

‘long term effects of those drugs’ – again as I chose not to take the early regimes offered to me I am not experiencing any long-term effects.

‘having lost hundreds of loved ones’ – I lost 3 significant people from AIDS related illnesses – my former partner Ian, my flatmate Pros and my first boss, Nick, all within a 15 month period and several friends from my early support group but hundreds, no – and so I cannot relate to that scale of loss.

However I still have lived through 18 years of knowing that I was infected and wondering if and when my health would fail; I lived through and still live with the rejection from my mother after she found out I was positive; I lived through making the decision to terminate a pregnancy a year into my diagnosis after being strongly encouraged by doctors who told me I was unlikely to live to see the child grow up; I lived through the times when t-cell counts were the only available blood test to base decisions on and less than 200 was the time to start treatment, unlike the 350 or 500 of today; I could go on…

But despite my experiences I still feel like an outsider amongst some of the LTSs who post here, hence my infrequent contributions now. If the proposed changes are adopted, just like in the real world of HIV support I will feel marginalized and excluded.

Thank you for your thoughts. It is not my intention to make any LTS feel unwelcome and I listed examples in the proposed introduction, to help other readers understand, what we mean by a LTS. From my perspective, the fact that you became poz in 1991, makes you a LTS. I did not mean for the examples, to be some sort of criteria that members had to meet, to post in this forum, but rather a more direct way to identify many of the pressing issues that we face. Given what you describe, of your own experience, I am confused as to why you feel excluded?

While you may not have lost hundreds to HIV, you have suffered significant personal losses to HIV and maybe that is the way we should say it. The fact remains that you are sensitive to the issues of LTS and just because your history may differ, does not make you any less of a LTS than me. I would also say the same about the other experiences that you shared, because the whole point of this forum, is for people, like you and me, who have lived with HIV for decades. While you may have taken a different path, it still led you here, where your life and experiences are important, and as relevent as any of ours, concerning the issues that LTS face.

I would sincerely like to hear your ideas, on how the introduction thread could be clarified, because the goal of this request, is to improve this forum, so that valued members like you, do not feel marginalized. I am passionate about this, Emma, because a large part of our goal here, is to re-establish this forum for LTS. All of us.

To the rest of the forum members, I want to be clear that what I propose is meant as a suggestion and nothing is written in stone. My hope is that we, as a forum, can reach a concensus on what would serve as an effective welcoming thread. I also ask all LTS members, to share their thoughts and ideas. If anyone does not feel comfortable responding in this thread, please PM your thoughts or ideas to either me or another LTS member, so they may be considered here.

This needs to be a collective effort and as such, any and all thoughts and suggestions are welcome.

Personally, I think anyone who tested positive prior to HAART is a LTS. Whether or not they experienced OI's, AZT or death doesn't really matter to me. I know they walked around with an emotional HIV Sword of Damocles hanging over their head for a decade or more. That's good enough for me.

I’m afraid I see elements of this proposed revision as divisive even amongst LTS. I read it and it made me feel like I wouldn’t be welcome here now despite having been diagnosed in 1991. The reasons I felt that:

‘decades of antiviral drug use’ – well despite my diagnosis 18 years ago I have only spent a total of 4 years on treatment (and that was spread only over the last decade).

‘long term effects of those drugs’ – again as I chose not to take the early regimes offered to me I am not experiencing any long-term effects.

‘having lost hundreds of loved ones’ – I lost 3 significant people from AIDS related illnesses – my former partner Ian, my flatmate Pros and my first boss, Nick, all within a 15 month period and several friends from my early support group but hundreds, no – and so I cannot relate to that scale of loss.

However I still have lived through 18 years of knowing that I was infected and wondering if and when my health would fail; I lived through and still live with the rejection from my mother after she found out I was positive; I lived through making the decision to terminate a pregnancy a year into my diagnosis after being strongly encouraged by doctors who told me I was unlikely to live to see the child grow up; I lived through the times when t-cell counts were the only available blood test to base decisions on and less than 200 was the time to start treatment, unlike the 350 or 500 of today; I could go on…

But despite my experiences I still feel like an outsider amongst some of the LTSs who post here, hence my infrequent contributions now. If the proposed changes are adopted, just like in the real world of HIV support I will feel marginalized and excluded.

Just my thoughts,

Emma

With the first sentence saying..."This LTS forum, is a safe place for Long Term Survivors (LTS), who are those who tested positive, before the advent of HAART and have lived with HIV since 1980s and into the early 1990's" and with you stating that you were diagnosed in 1991...I'm finding it hard to see where you aren't a LTS or somehow not allowed to post here.??

I’m afraid I see elements of this proposed revision as divisive even amongst LTS. I read it and it made me feel like I wouldn’t be welcome here now despite having been diagnosed in 1991. The reasons I felt that:

‘decades of antiviral drug use’ – well despite my diagnosis 18 years ago I have only spent a total of 4 years on treatment (and that was spread only over the last decade).

Hello Emma,

You absolutely do belong in the LTS's forum, anytime you feel like it !!

I was diagnosed positive in 1985, but didn't start meds until 2003. I've been on meds a little over 6 years. Does that make me a long term survivor? You bet it does! For whatever reasons I chose, to allow myself to get an aids diagnosis in 2003, is water under the bridge at this point in my life. I made my choices, right or wrong.

There is nothing I can do, to turn back that clock. I had to get myself into survivor mode, more times than I care to mention, throughout these past 24 plus years, and especially in these past 6 years, even though most of those years were living healthy .

If the proposed changes are adopted, just like in the real world of HIV support I will feel marginalized and excluded.

My dearest Emma,

I would hope that you, one of the very first people I met here that had lived through a similar situation and could really understand what I had been through , don't feel marginalized here. Why just go back and look at your posts. Every time you have something to say, a bevy of supporters are there to listen in, and wish you well.

(If someone ever has made you feel excluded, just tell me and I'll sic my boyz [the cocker spaniels] on them LOL)

Having been through similar circumstances (both of us diagnosed in the early 90s, both of us having chosen quality of life over meds on occasions, and both of us having lost a dear loved one to this disease), you gave me support, offered a shoulder to cry on, and a sympathetic ear. Just as part of Ian remains in the world today because you are here to tell his tale, the memory of Randy (and now Jim) will never truly be gone while I'm here still speaking of them. You, as many others I have met here, have been a trouper with your losses and choices and are as deserving of the title LTS as anyone.

You never called anyone a victim and never told anyone to stop dwelling in the past. You didn't brag about not taking the early meds, instead you told us about your worries over whether you had made the right choices, and the thoughts you had reaching those conclusions. You didn't brag about losing no one to this epidemic, instead you commiserated with others in their loss by quietly sharing your own loss. You understood that the years of living with this disease, the deaths, and the meds (taken and untaken) means the past is always part and parcel of who we are today - Long Term Survivors.

mikie

of course I could have send this to Emma in a PM; but just as I am eternally grateful to those who supported me through losing Jim and never miss an opportunity to say thanks (thanks again, you guys!); I similarly appreciate the support Emma gave me when I first joined, wanted y'all to know what a help she was.

My partner Randy had been dead for years, and I was living in a small town, 550 miles from my family, certain I was the only person left alive from the 90s dealing with AIDS. When I joined here I found people who had been surviving just as long as I had. I even found people who had lost the loves in their lives. Because of Emma, I found I wasn't so alone after all.

Ever since then, I've tried to emulate the kindness Emma showed me in answering the questions, fears and issues that I can of those new people who seem to constantly be joining our group every day.

LTS has a different meaning for each and everyone of us. This meaning does not need to be defined by decades, by years or by days.

We are all LTS as far as I am concerned. Each of us has had to follow our own pathway on our journey with AIDS/HIVS. Some have walked miles, some yards, some feet and some inches. But each step on our own personal journey makes each of us a LTS. How can anyone quantify what someone else's journey means in terms of being a LTS?

Friends, look back on the day you got the call, be it twenty years ago, twenty days ago or twenty minutes ago. Are we all not LTS in our own right?

I know that everyone is on their own journey, but someone recently infected or within this decade (such as yourself Ric with all due respect) would not understand fully. I came here to this particular forum, because all my LTS friends are gone. THere were no support services for young people when I was infected. There was no real treatment, just literally "start making arrangements now"

FYI, I was Dx in 2001 but with a CD4 count of 50ish and a VL of +490,000, I was not recently infected. I think this proves my point. Time really means nothing in terms of LTS. Walk in my shoes, I can hardly walk in them because of PN.

FYI, I was Dx in 2001 but with a CD4 count of 50ish and a VL of +490,000, I was not recently infected. I think this proves my point. Time really means nothing in terms of LTS. Walk in my shoes, I can hardly walk in them because of PN.

No one in LTS is denying or denigrating (as some have chosen to do) anyone's experience with HIV. Be it one day or one hundred years. Collectively, as LTS we sought out and were granted a forum because we felt there was a need. Obviously from the overwhelming responses from LTS' this is still the majority opinion. I do find it rather telling that people who have never stepped foot in LTS are suddenly consumed by it. This new meme that we are all LTS is just not true. We are all positive but we are not all LTS and every LTS knows that. This forum is worth fighting for and I hope my LTS brothers and sisters are willing to do just that before we lose it. Just for the record we LTS are all too familiar with PN and empathize because the majority of us suffer from PN. There have been several threads on the topic.

I like all of these members who complain about the LTS section, insist that they are in fact a LTS, yet never ever participate and/or offer any sort of support to other LTS here. What's up with that? It's like they're walking cadavers.

It's like only when there's an opportunity to stir up more drama that they all suddenly rush in. I just find it off putting, frankly.

I find it quite interesting also, that there are a couple forum members I've never seen in LTS'ers suddenly appear and try to dictate what defines a LTS'er. And what's even more interesting, is that they are from the AMG clique. I'm sure the battle cry went out.

I don't think this should turn into an us vs. them battle. I was thrilled to see a LTS forum when I joined AidsMeds. In my town, there may be some LTS'ers, but I don't know any of them. In the last four years, I've lost four friends. The last LTS'ers I knew around here. This is a forum worth having. And just as in our women's forum, we don't let men post, I believe in the LTS forum, there should be guidelines as well about who can and can't post. It's only fair. I don't want someone giving me advice about my lipo, or why I can't remember something I've always known at any given moment, when they've never experienced is personally.

Logged

I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

While this thread screams for personal responses to posts, and some discomfort on the part of some of the LTS’ers, I will try not to make this personal to anyone who has already responded here. If my post seems to you to be a personal attack, I refuse to be responsible for those feelings/thoughts.

In another thread in this forum, Jan recently posted this reply, which I place here out of the blue box so all can focus and read:

Jan stated : Those who remember HIV being referd to the "GRID"(gay-related immune deficiency), stigmatizing the gay community as carriers of this deadly disease.

The Canadian flight attendant, nicknamed "patient zero" ...and After 6 years of watching people die, those who remember the "new treatment" Retrovir (AZT, Zidovudine).

This from a woman who was a nurse for her life’s profession, and undoubtedly lived this experience, even though it was years later that she would join us as an HIV+ person.

Joe, I certainly concur that your re-write of the welcome thread is long overdue, and should be edited and posted as soon as possible. I don’t use either this site or this forum much anymore, mainly because in the early days of my experiences here, I was scoffed at, reported, and raked over the coals more than once for my dogmatic approach to HIV. Most of which grew out of my LTS experiences of seeing, tasting, smelling and watching the deaths of so many, that I was ill equipped to deal with a website full of people who thought I was not only a scaremonger, but very depressing in the least.

I thought and hoped that this forum would be a place where I could simply sit down and type, and those participating would understand, and temper their responses to MY experiences in life, post infection in 1983.

Soon enough I found this was not true, and the same thing started to happen in this forum that was happening in all the others. I decided that I would simply limit my participation here in the newly polished “POZ incorporated” site, and just live my life as I used to; a fairly lonesome HIV experience.

Now I see a thread which has been visited by people who are trying to equate their post infection experiences to mine, and to simply create a nice feel good- forum where we are supposed to expose these innermost anxieties and let them be raked over the coals by anyone and all who chance to click in. I protest, and I still refuse to be involved in a forum where we LTS’ers are simply on display in a museum of gore and emotion, that is open for anyone to come in and participate and comment on our pain.

NO we are not all LTS’ers. Not under any definition that makes any sense to us that have lived that gore in reality, and not read about it in a book, or ignored it when it was happening; only to come up HIV+ years later and were forced to deal with this terminal disease.

I will return to AIDSmeds with my personal experiences and HIV life, but not until this forum is only for those who really are Long Term Survivors, by the definition posted in this response.

Logged

The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

I find it quite interesting also, that there are a couple forum members I've never seen in LTS'ers suddenly appear and try to dictate what defines a LTS'er. And what's even more interesting, is that they are from the AMG clique. I'm sure the battle cry went out.

BT65,

"AMG clique"? Have you lost your mind? I know that the virus does cross the blood brain barrier, but really.

For those of you who find my very presence in this LTS Forum repulsive, fear not, I'm gone. Sorry if you think that I have intruded into your "sacred space".

For those of you who find my very presence in this LTS Forum repulsive, fear not, I'm gone. Sorry if you think that I have intruded into your "sacred space".

With respect to all, Ric

I don't find your presence in the LTS forum repulsive. Ric, you've been a member of these forums since 2002. Your posts , along with Rab's and Joe's, were the first members, I remember reading back, when I joined in 2003.

Betty, I am not quite sure why you referred to the AMG as a Clique. I really believe that was unecessary.

Can you people PLEASE keep the AMG forum and the LTS forum separate? Is that difficult?

Because I'll tell you this - I'm on the side of the LST forum being exclusive. However, if you continue to bring useless, unrelated issues into the fray, then you're doing nothing but weakening my bargaining position. Knock it off, will you?

You are ALL starting to really piss me off. Take from that what you will; and I'm sure this will be used against me. Tough. I'm getting tired of it.

All I want is for this place to work and for all of us to get along. Fuck me, I'm naive. So be it.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

For those of you who find my very presence in this LTS Forum repulsive, fear not, I'm gone.

wow, since no one posted anything like that, all i can figure (since I have no idea how the the AMG thread is supposed to be involved) is that BT must have been right and somebody got their toes stepped on, cause I sure hear some hollerin'. Wow! This all just gets weirder and weirder.

Of course, anyone can reply to that comment (and Ann will get 'cha! ); but my post isn't about trying to figure out this bit of strangeness. What I'd like to do is get back to the OP and try to offer an alternative suggestion as we're discussing the policies of the LTS forum.

this all started when a member, who had never posted in the LTS forum, came in stating how he didn't think the rest of us should be "quibbling" and complaining. He then proceeded to brag about not having to go onto any meds until into the 2000s and not having known anyone that died of AIDS; yet complaining that somehow that meant that his life had been just as miserable as others, giving him the right to diss people in that thread.

And so we began again to try to find a definition to explain what a long-term survivor is. I'm beginning to think that "Long Term Survivor" is perhaps the wrong term. So many people want to get into a pissing contest about how long they've lived with HIV, when really what we're trying to delineate are the problems associated with when people were diagnosed and when they began treatment.

As I've said before I just don't understand why people can't see that the people infected that went onto treatment at the start of this epidemic are having a different life dealing with this disease and the treatments than the people that were infected or went onto meds literally decades later. We're discussing two (or more) radically different groups of people with different treatment/therapy regimens.

At times it seems like people are almost hoping that their lives had been screwed up even sooner by AIDS, that they had been sicker, and that they had taken less-effective meds, instead of being happier that things were better, that they had less side effects, that their friends were still alive, and that they weren't living under a death sentence. That's what happened to people are the start of this epidemic, to those people dealing long term with HIV/AIDS. But it's not really that they want all the troubles actually associated with being an LTS, they just want the notoriety of having dealt with the situation and with HIV for what seems like "long term" to them.

As in any other epidemic perhaps we could reconsider some nomenclature that denotes the waves of people infected with this disease. For example, those that were diagnosed in the 80s are the "first wavers". For most of them there weren't meds and the prognosis was death in 18 months. Quite frankly most of them are long dead and gone; thankfully some have survived those times. Then there are those who were diagnosed from 1990-2000, the "second wavers". They started on some pretty crappy meds, the diagnosis was still death (but by then it was up to 24 months), suffered lots of side effects, were usually disabled by this disease and endured the endless deaths of friends around them. Those from about 2000 on could be the "third wavers". They started on much better meds, their prognosis is no longer death but potentially a full life, few to no side effects, and no dying friends.

These designations would better describe the issues that we all deal with in our separate waves (the meds, the side effects, the amount of deaths) and everybody wouldn't be competing in a pissing contest to claim how long they lived with HIV, as we all know that living with HIV and living with AIDS are vastly different experiences.

We're not actually taking about "length of time" when we're talking about long-term survivors, we're talking about a "time period". Having been diagnosed in 1992 and gone onto AZT soon thereafter, I will always have issues that pertain to having been diagnosed and treated in THAT time period, not for how long I've stayed alive per se. In 2020, when I'm celebrating 37 years with AIDS (how's that for some "positive" thinking? ) I will still have issues that someone diagnosed in 2000 celebrating their 20 yrs with HIV will not be having. Having HIV for a certain amount of time is not the criteria we should be judging by, though perhaps having AIDS for a certain amount of time is. Being a long-term AIDS survivor is vastly different from being a long-term HIV survivor.

Somehow I think that the name "Long Term Survivor" is a misnomer for the actual underlying issue. I have survived AIDS since 1992 (A92) and my situation will always be different that someone diagnosed with AIDS in 2006 (A06) no many how long we both live. And my life is much different than someone diagnosed with HIV in 2004 (H04) that has yet to change to an AIDS diagnosis. "Long Term" means nothing to our disparate situations.

I hope my thoughts haven't muddled up the issue too much, and I'm not trying to pick any fights. I'm just trying to throw out what I see as the problem. I'm not strictly advocating a name change, but as time goes by more people will consider themselves an LTS yet they will never have the issues or concerns that we current LTSs discuss within this forums. I believe this current situation when a person who changed to an AIDS diagnosis in 2002 already considers himself to have the same life as some of us diagnosed over a decade earlier clearly illustrates the problem. As time goes by, (2 yrs, 3 yrs, 5 yrs) eventually all the people posting in Recently Diagnosed and Living With will be moving into this forum and unintentionally giving us the same grief we had before the formation of this forum. As we see, it's already happening - and all because everyone wants to think that they are a long term survivor.

We are not excluding anyone participating here, but we do ask that you be mindful of the special needs for which this particular Forum has been established.(emphasis added.)

This member subsequently chose to represent himself in a PM to me as a LTS, although this wasn't quite the truth as he was only diagnosed in 2003. He has admitted as such in another PM.

What we are tying to achieve here is whether or not non-LTSers are permitted to post in this forum. All else is irrelevant.

I believe, for the purposed of this forum, that an LTS is someone who was diagnosed with hiv infection prior to the advent of HAART circa 1997. They are people who were told to get their affairs in order. They are people who experienced OIs and/or the debilitating side-effects of the early meds and continue to feel the effects of the same.

I really don't understand why some people don't want LTSers to have their own safe space. If you don't "get it", count yourself lucky.

I'm probably committing AIDSmeds suicide here, but this is something I feel very strongly about. There are at least a dozen other forums a non-LTSers can post in - what is the problem? Why can we not show our fore-bearers some respect? We owe them this, at the very least.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

[quote author=Ann link=topic=30013.msg368218#msg368218 date=1259120I'm probably committing AIDSmeds suicide here, but this is something I feel very strongly about. There are at least a dozen other forums a non-LTSers can post in - what is the problem? Why can we not show our fore-bearers some respect? We owe them this, at the very least.

Ann[/quote]

Well Ann if you are committing AIDSmeds suicide then you won't be going alone...I'm with you all the way on this...Give the LTS a break, God knows they deserve it.

this all started when a member, who had never posted in the LTS forum, came in stating how he didn't think the rest of us should be "quibbling" and complaining. He then proceeded to brag about not having to go onto any meds until into the 2000s and not having known anyone that died of AIDS; yet complaining that somehow that meant that his life had been just as miserable as others, giving him the right to diss people in that thread.

I'm becoming extremely irritated that you keep accusing me of "bragging." There are many sides to this f****** disease, and they all don't include what you LTS describe. If you can speak of your misfortunates in essay long posts then I sure as hell can make mention of my blessings in a sentence or two without being accused of bragging.

At times it seems like people are almost hoping that their lives had been screwed up even sooner by AIDS, that they had been sicker, and that they had taken less-effective meds, instead of being happier that things were better, that they had less side effects, that their friends were still alive, and that they weren't living under a death sentence.

Funny you should state this. Because when you accuse me of bragging for not having the misfortunes you have, I feel as if you wish I did.

Some of you can be so fucking selfish. You want to hear a sob story. Here's mine. Take it for what it's worth.

I was diagnosed when I was 20 fucking years old. Do you know at what age I probably acquire HIV? Probably when I was 16 years old when I carried on a 2 year relationship with a 28 year old man. When I was 18, I entered another relationship before being diagnosed which lasted for about 1.5 years. These were the only 2 people I ever slept with before being diagnosed. They are both HIV+. I keep in touch with the second partner. I' lost contact with the first some years ago. For all I know he's dead. So...even though I wasn't diagnosed until the age of 20, it's pretty safe to say I was infected up to 24 years ago. Can you comprehend how being infected at such a young age affected me? Let me tell you.

Prior to being infected, I was accepted into the University of Miami's Marine Biology and Fisheries program. My childhood dream has always been to work with dolphins and killer whales. Guess what? That fucking dream was shot to death when I was told I only had a maximum of 10 years to live.

Instead, my case manager at the South Beach Clinic (where I was diagnosed) advised that very same day I should file for disability. Not knowing any better, and with her help, I did just that. Here's another shocker. I was approved without any fucking hassle!

So, with my disability checks and the large settlement I received from an accident when I was younger, I bought two condos in Orlando, did extensive traveling, and of course got into the whole drug scene. Afterall, what the hell! I was going to die by the time I was 30 anyways, even if I took the damn AZT.

My mind frame at that young age was to live my life to the fucking absolute fullest. Especially since I would be dead in 10 years. Why would I wanna waste my time with doctors and popping AZT which wasn't going to extend my life much further at that time (or so I was told).

So push forward a little bit when I realized "I'm not going to fucking die!" and I have no money, no college education, and I wasted over $300,000. Good part about this realization was I stopped the drug use immediately. What I wound up having to do was pay back the government over $4,000 in overpaid disability payments because they realized I'm not realy disabled. I just finished paying that off a little over 2 years ago at the age of 36.

I already mentioned my experience with PCP, so I won't bore you with my bragging of that time in my life. Perhaps I should brag about having shingles twice. Or perhaps having to go in for surgery to have a patch of skin cancer removed after AMG Mexico City.

I won't even begin to explain the psychological issues involved with being infected at such a young age at that time and still haunts me today.

So here I am at the age of 38 trying to place catch up for the past fucking 20 years. I have two years before I complete a degree in both Exceptional Student Education AND Psychology. So when you criticize my spelling, it's usually because I'm posting between subsituting, tutoring, planning AMG, or working on coursework for two majors. Important part is, my spelling and grammar are correct when and where it counts the most, and the forums are not one of them.

The unfortunate part is, after I graduate I'll have 24 years at most to enjoy my career. That is if this fucking disease doesn't take me out before the age of retirement. I'll probably just finish paying off my student loans by then.

So, no! I have not experienced the misfortunes you all have. My path was different. But there was turmoil and misfortune none-the-less! Don't think for one minute that because all of us here don't lay out in detail our troubles with this fucking disease that we don't have any.

Before you accuse me of bragging for where I am today, I dare you to walk a fucking mile in my shoes through my past. I think I've earned that right to brag, if that's what you want to call it. And regardless of what you define as LTS, I will ALWAYS consider myself a LTS, because I am surviving and will continue to do so until the day this damn disease decides to take me.

I do agree with you on one point, though. Perhaps Long Term Survivors is not the correct term to use in this instance. Because again, I strongly believe the key word in this term is "Survivor."

Edited to add...I'll take my damn TO now!

Also, I never made any mention there should not be a LTS forum. What I object to is what conditions people are placing on what a LTS is.

Have you lost your mind? I know that the virus does cross the blood brain barrier, but really.

Really? I'm not the one who claims to have been infected by a corpse.

Sorry mods, but this was a blatant personal attack, that went by without a mention. I admit I've said some things in this thread, but not once did I ever call into question the capabilities of a person's mentality. It's bullshit.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Sorry mods, but this was a blatant personal attack, that went by without a mention. I admit I've said some things in this thread, but not once did I ever call into question the capabilities of a person's mentality. It's bullshit.

And Betty, I'm sure you're aware that two wrongs don't make a right. It's one thing to voice your opinion about Ric's flamebait, or to express your disappointment that the moderators didn't respond quickly enough, but it's something totally different to counter flamebait with flamebait, which is exactly what you did in your first sentence above.

I have to warn you as well.

ENOUGH everyone. Cut the flamebait already. I swear, sometimes it's like patrolling a school playground around here. Is it too much to expect more from people who are allegedly adults?

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I'm not even going to pretend I know what's going on here. I don't even know what an amg clique is. What I do know is that LTSs have specific life experiences and issues that can best be supported in such a peer network like this, by people with similar experiences and issues--ergo a LTS forum.

But I really have to say--it would be VERY nice to have some of the energy used on this thread battering each other back and forth refocused toward advocacy and activist issues.

I have been away, so this is a shock.personally I want a space where the focus is on making sense off living with hiv for a long time, and I am not bothered by visitors, If there comments hit a nerve that might even be useful to me. If the space is headed LTS that will and has created the space I am looking for, in fact as long as people identify themselves as visitor's or whatever I would prefer it.Totally agree MarcoDennis, thank you .I am sorry if you felt pushed into talking about stuff you would rather not, I welcome your posts and hope your self imposed TO is short.Ann half term hols coming up?theyer/michael

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

This forum is a safe place where those who have been living with HIV for anywhere from several years to decades can come to discuss the issues they confront. Among other things this is where they can talk about their experiences as well as the special challenges they have to deal with physically, emotionally and otherwise that come with having lived with HIV for a lengthy period of time. It is also a space intended for those who maybe more recently infected but are older in years, and therefore have to deal with special issues related to living with HIV at an older age.

At the same time we hope that those who are newer to living with HIV will be able to benefit from the knowledge and experience that will be shared here. We are not excluding anyone from participating here, but we do ask that you be mindful of the special needs for which this particular Forum has been established.

Thank you for your cooperation.

Well, what's the problem? I think THIS says it all.............no?

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

I have been away, so this is a shock.personally I want a space where the focus is on making sense off living with hiv for a long time, and I am not bothered by visitors, If there comments hit a nerve that might even be useful to me. If the space is headed LTS that will and has created the space I am looking for, in fact as long as people identify themselves as visitor's or whatever I would prefer it.Totally agree MarcoDennis, thank you .I am sorry if you felt pushed into talking about stuff you would rather not, I welcome your posts and hope your self imposed TO is short.Ann half term hols coming up?theyer/michael

I don't see where anyone "pushed him" That makes him sound like he was a victim or something.

We are not excluding anyone from participating here, but we do ask that you be mindful of the special needs for which this particular Forum has been established.

Well, what's the problem? I think THIS says it all.............no?

Den, the part of the current LTS Welcome that is being debated is the portion I highlighted above in blue.

Many LTS posters feel they wantneed a place where they can post about their experiences as a long-term survivor, without having to explain themselves, but yet still be addressing an audience who knows what, exactly, they're talking about. A place where they can discuss these aspects of their lives without having to answer intrusive questions or be told they're being too pessimistic or that they're scare-mongering. Because this is exactly what often happens when they post their reality. Although the line I quoted above asks that people be mindful of the special needs this forum was created for, it doesn't always happen. We've had a good two years now in which to see if it works - and while it often does, it doesn't always. This current debate sprang up because someone started asking intrusive questions inappropriate to the subject of the thread - and things came to a head.

I don't understand why some would want to deny them this safe space and demand that anyone should be able to post here. It's not like there aren't at least a dozen other forums at one's disposal. We all owe the LTS community - and by that I mean those people who were diagnosed pre-HAART and were told to get their affairs in order, and who suffered through many OIs and/or the early, very flawed, meds, and are still living with the medical, physical and emotional effects of those dark days - we owe them this safe space and our resect, at the very least. I don't think it's too much to ask.

As most of you are aware, this is the week of Thanksgiving, and in the spirit of Thanksgiving, I ask that we all step back and consider what is being asked here. A group of people want a safe space where they can sometimes withdraw from the greater community to commiserate amongst themselves. They want this safe space so they can re-emerge fortified and sustained by their peers, so they can better serve the greater community - or just be able to get through another day. I don't think this is too much to ask.

And while on the theme of Thanksgiving, I'd like to say that I give thanks for each and every one of our LTS members. Where would we be without you all?

Also, because of it being "the holidays", this debate probably won't reach a conclusion until next week. Thank you all for your patience.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I don't understand why some would want to deny them this safe space and demand that anyone should be able to post here. It's not like there aren't at least a dozen other forums at one's disposal.

This all should be much simpler than it is -- it's no different a request than the formation/existence of my real life support group which is restricted to LTS. Just as one practical example, why should any long termer have to (or would want to) field constant questions about lipo or PN from someone who isn't even on meds yet or isn't on older, barely prescribed meds that cause such things. But this is exactly what happens with a variety of subjects when either there's no LTS forum or it's not restricted, and rather than be bothered with what is effectively the HIV equivalent of Am I Infected OCD'ers the LTS either just leave or don't post, or post with less frequency -- and is that fair to them? Why is it some offensive or abnormal request to have a space to gain the support that AIDSmeds forums are supposed to be for?

I'll tell you why -- because there's a gross and repugnant misperception on the part of non-LTS members that we're simply wanting to have some selective, elitist VIP club which when you think about what it is that LTS wish to discuss it's just very offensive and laughable. I'm completely amazed that the current request is even seen as anything odd to request.

Personally, I think anyone who tested positive prior to HAART is a LTS. Whether or not they experienced OI's, AZT or death doesn't really matter to me. I know they walked around with an emotional HIV Sword of Damocles hanging over their head for a decade or more. That's good enough for me.

I am inclined to support a rewrite of the LTS Forum introduction that is more along the lines of what Hal has indicated here. Joe, would it be possible for you to rework the drafted intro a bit, so that it issues like extensive ARV use, long-term side effects and a long history of bereavement are examples of long-term HIV/AIDS survival, but not necessarily requirements for LTS Forum participation?

As we still have a very active "Living With HIV" Forum -- it's encouraging to see most of the HIV-positive members here, with a variety of POVs, still participating and exchanging information and support -- I, for one, would certainly be okay with limiting participation in the LTS Forum. That said, moderating is going to be required, thus Ann, Jan, Andy, David and I are going to need some sort of clear parameter to draw upon if we are asked to step in. If the it's a diagnosis of HIV infection prior to the widespread use of HAART -- which, technically, is anytime before 1996 -- that's fine with me. We just really need to be crystal clear in this regard to prevent subjective definitions going forward.

Thank You Ann, and Miss-P, and Tim, I can only hope, that this will happen, as a LTS myself, I do understand, but, in reality, there is going to be a lot of opposition on this subject by a lot of non-LTS, and some are even going to be somewhat offended by this, as I've been following all of this, and someday I hope that the Non-LTS will understand the reason why there is a need for this...what pains me so much about being a LTS is the fact that, Non-LTS just don't understand what it was like for a lot of us, and to simply blow all of us off, is just plan RUDE, DISRESPECTFUL, YES it matters to us, but to them is doesn't, what all of us LTS have experienced, is and will always be different, to a non-LTS

« Last Edit: November 26, 2009, 09:42:06 AM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

I am inclined to support a rewrite of the LTS Forum introduction that is more along the lines of what Hal has indicated here. Joe, would it be possible for you to rework the drafted intro a bit, so that it issues like extensive ARV use, long-term side effects and a long history of bereavement are examples of long-term HIV/AIDS survival, but not necessarily requirements for LTS Forum participation?

thank you for considering this. I know that some LTS and newbies may want to participate in some type of mentoring, so maybe someone can mention/start that up in the Living With forum (which would cover this need)

As a non-LTS, I'm in total support of the LTS forum and proposed changes.I can still vividly recall cuddling up with my best mate back in 89-90 and thinking, while I could empathise, I really couldn't understand what he was going through 24/7. This hasn't changed with time or my own diagnosis.

I am very pleased that the LTS forum welcome is going to be revised to make it a truly safe place. Thank you, Tim, for making this possible.

Once the revised welcome is in place, I'd like to request that when someone who shouldn't be posting here turns up, LTS members hit the report button instead of addressing the person yourselves. Admonishments are usually taken better when they've come from a moderator. This way, if the person comes back to argue, they'll be arguing with a moderator instead of an ordinary member and it won't turn into any sort of flame-war.

In fact, it would be best to not acknowledge their post at all, aside from hitting report. This course of action will make it easier to simply remove that person's post, and the moderator who takes care of it can PM that member to inform them of the LTS rules. Doing it this way will save cluttering up threads with moderator warnings.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts